Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Monday, December 31, 2012

Happy New Year 2013!

This morning I went to my computer with the attempt to make a snap shot of pictures I wanted to send to Family and Friends about our past year.
Well, considering that I take thousands of pictures each year this was not easy and even with my best attempt I ended up with 418 pictures I wanted to send out.
So I had to change course and just post an Album on FB for everyone that is on FB to see :)

Looking back at 2012 we have to say it was a wonderful year with just a few setbacks.
This year was all my heart could wish for when it came to traveling and spending time with Family and Friends!
We also became Grandparents again and the best news over all is that no one in our immediate Family passed away this year. It is amazing how much fear that is I carry in me when I worry about this huge Family I have and how easy one of us could get sick, hurt or pass due to age.
For CureJM and it's warriors it was a challenging year as we lost a few of our so loved fighters and children! Connor had his Medi Port taken out this year BUT then ended up with a Flare shortly after which he is still trying to recover from now. 
As to trips we went on many Road Trips this year:
We drove to Las Vegas, to Oklahoma, South Dakota, Texas and Washington State. Due to driving we got to see and tour around Utah, Idaho, New Mexico and Oregon.
As to flying we stayed busy as well as we went several times to Texas but also to Alaska and to Germany again. Mt Gypsies heart was in pure heaven this year :)
As to fun in our beloved home State Colorado we were so happy to have friends and family visit this year. We had several visitors from Germany but also our beloved friends the Tossell Family and the Miller Family.

We were so happy to explore the Rocky Mountain National Park not just once but twice this year. We fell in love with Estes Park and Boulder and we had many outings to Denver to visit Museums and 16th Street.

Truly all in all 2012 was very good to us and we are grateful! Alexander, my precious soul, cried this morning about not wanting to leave 2012 yet ...., I guess that he really thought this year was amazing as well :)

We so wish all of you that 2013 will be a year of peace and Hope and I hope for all our dear friends and family that had huge struggles this past year that this New Year will turn things around and bring you answers and solutions!
For CureJM I wish to see many Remissions and this so elusive CURE. My  wish for 2013 is to make the Conference this year in Chicago!

Thank You to all of you that have been such wonderful friends to me! Your support and love really kept my spirits up.
Tonight we will be staying home and having our own little Party with the Boys. They wanted our Traditional Fondue again so we will have a lovely slow dinner followed my movies and playing games.

Lot's of Love!

Happy New Year!!!!!

Hugs,

R A C A

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